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Newly Diagnosed

DanTW
Posts: 5
Joined: Dec 2011

Hi All,

I've been reading since last night and find all of your input very informative. Thanks.
I was just diagnosed this past week, and My wife and I are just trying to digest things and begin talking about a path forward.
As a result of my GP finding a bump, I had a needle biopsy with the following results:

7 of 14 cores 5 - 40 involved, Gleason 3+4=7

My doc says it's Stage 2b. I'm 56 and in good health. PSA about 1-2.
I'm with Kaiser in No. Cal. I'll be seeing my urologist on this Wednesday.

Any advice as to what questions I should ask?

Thanks...

rch
Posts: 78
Joined: Nov 2011

Please ignore this. I saw your updated post !!

Hi DanTW, Please clarify your PSA and biopsy results for us. PSA 1-2 ?? Also, is it 5 core 40% involved?? If it's clinical stage T2b,it is a palpbale tumor on one lobe. Also, if you wouldn't mind, please share with us how close are you to the Bay area?

P.S. I'm also with Kaiser in N.Cal

hunter49
Posts: 200
Joined: Oct 2011

Sorry to welcome you to the club. However, you are among a great group of strong men and women. Yes women too. Your wife will be going through this with you. I have found my wife to be the best rock and therapy I could find. First your PSA, is it really 1-2?? Have you had previous PSA tests and if so when and what were the numbers. If correct then that is very low number and a very good thing. Do you know if perinueral or vascular invasion was noted on the bioppsy? Since you are young and in good health you can choose several options of treatment. I chose surgery and had it 4 weeks ago. My cancer went from a 3+4 to a 4+3 upon final pathology, but was contained. All margins, tissue seminal vessels and lymph nodes clean. That is a good thing. I am 49 and in good health. I will tell you the surgery was not bad. I never took any pain meds, just tylonol to sleep. I am glad with my choice as I now know exactly what I had. My cancer was somewhat unique as it was not multi-focal (only 2 nodules) and grew inward. You need to see what the urologist recomends and absolutely get at least one other opinion on your slides. I went to Johns Hopkins which was great. You may want to find out about any multui diagnostic clinics. That is where a team of surgeons, urologists radiologists and oncologists review your case and slides. They then convine to decide which treatment would be best. Do not go crazy reading statstics as that is all they are. You shaould see if your doctor wants to do a bone scan and a CT scan to make sure no metastisis has occured. Also, ask what type of cell your cancer was (small cell or adenocell) that will make a difference. Most important ask him if he feels it is contained. If it is not you may really try to avoid surgery as radiation will be your best bet. Good luck and please feel free to ask any questions you can think of. There is a very knowledgable group here. Most are only pooor typists or spellers.

mrspjd
Posts: 688
Joined: Apr 2010

Doug,

As one of the women posting on this mostly male PCa forum, I really wanted to give you a big “shout out” and say thank you for your acknowledgement of the role of women/wives in PCa, not only here on this CSN site contributing/sharing their experience to discussions, but also in general, pertaining to PCa education/advocacy for both men and women.

I, for one, appreciate your comment to Dan that “You are among a great group of strong men AND WOMEN. YES WOMEN TOO. Your wife will be going through this with you.” IMHO, when it comes to PCa, some men want to fly solo, either by choice or by circumstance. Granted, PCa strikes only males but women/wives are affected also & that is why PCa is often called a couples disease. From my perspective, many of us women are on this, often wild, sometimes scary, PCa ride as a co-pilot, with our husbands in the pilot’s seat. We are seated right next to him and we play a role as a committed team member & partner, sharing and supporting him (and each other) on a journey together with common goals!

Doug, I hope that your recovery is coming along and that you are doing well. From one wife to another, please give my warmest regards to your rock & therapist—in other words, your wife!

I wish you both all the very best.

mrs pjd

rch
Posts: 78
Joined: Nov 2011

I was at Barnes and Nobles in Walnut Creek CA today to look for some books on Prostate cancer, and couldn't find any!! I finally went to the main desk and asked the lady who checked on her computer and directed me to the correct location. They were all shelved under 'Women's Health'!!!

mrspjd
Posts: 688
Joined: Apr 2010

1. Maybe only women are reading the books on PCa ;)
Or…
2. More than likely, B & N needs a little PCa education re men’s health…
But…
3. At least they have PCa books on the shelf. Recommend searching online (Amazon, etc) for books, either hard copy and/or downloads.

Swingshiftworker
Posts: 625
Joined: Mar 2010

I was with Kaiser Norcal too and they will only give you 2 choices for treating early stage PCa -- surgery (Davinci or open) and Brachytherapy (BT).

I am opposed to using surgery to treat low grade, early stage PCa w/surgery because of the serious risk of side effects w/potentially catastrophic consequences to your quality of life related primarily to incontinence and ED. If you're wondering what those risks and consequences are, please read this article which I think sums them up best: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

I can already tell you that the NorCal Kaiser physicians have very limited experience doing DaVinci (robotic) PCa surgery about 50-100 when I first spoke w/them and maybe around 200-300 now (which according to one paper is a bare minimum of experience). IMHO, you should not let any doctor w/less than 1000 DaVinci PCa surgeries cut out your prostate because, if they have less than 1000 PCa surgeries, they are still learning and will be practicing at your expense.

Open surgery is an alternative but, although there are those surgeons who prefer open over robotic surgery, there are greater surgical risks w/open as opposed to DaVinci surgery and each method still presents the same general risks for ED, incontinence, infection and other surgically related problems and the same potential negative consequences on your quality of life following treatment.

At Kaiser, the DaVinci surgeons don't just do PCa surgeries. They do other organ surgeries as well. So you have to ask them specifically how many PCa DaVinci (as opposed to other organ) surgeries they have done.

Also ask your the urologist/surgeon about the risks/consequences of surgery discussed in the article mentioned above and about the alternative treatments mentioned below. If they fail to acknowledge the risks/consequences of surgery and/or dismiss and do not intelligently discuss the comparable risks/benefits of the other therapies then, you should find other urologists or specialists to speak with.

Low Dose Rate (LDR) BT is a reasonable alternative and has a good track record, but it also not without significant risks. Kaiser NorCal does all of its LDR BT through it's radiation treatment center in Roseville. They offer a day long (informed consent) seminar which goes over everything they do and their "success" rate. I went to it and it was very informative.

High Dose Rate (HDR) BT is a better alternative than LDR BT but I do not know if Kaiser offers it; it wasn't offered to me but I didn't know to ask about it at that time. The critical difference between LDR and HDR BT is that LDR uses individual radioactive seeds that are placed in your prostate permanently and HDR BT does not.

With LDR BR you will be radioactive for about a year and will be subject to greater scrutiny during airport and metal detector screenings. HDR uses radioactive threads that are placed temporarily in your prostate. The quality of both treatments depends on the accuracy of the placement and dosage of the radiation via the seeds or threads. If the placement/dosage is incorrect collateral tissue damage can occur to the urethra, bladder and/or rectum resulting in incontinence, ED and other issues.

Ask your urologist if Kaiser offers HDR BT and if you can get in in lieu of LDR BT.

I was diagnosed w/PCa (Gleason 6, PSA 4.2, Stage T1c) at age 59 in Jan 2010. After doing my research, I decided that the options provided to me at Kaiser were insufficient. I discovered that UCSF offered a cutting edge technology called CyberKnife which offers an extremely precise deliver of external bean radiation that tracks both body and organ movement with minimal potential side effects. I switched from Kaiser to Blue Shield in June 2010, received CK treatment in Sept 2010 and have had no side effects -- ED or incontinence -- whatsoever. The jury's still out on whether the treatment has been successful or not but, except for surgery, you won't know if any form of radiation treatment is successful or not for at least a couple of years.

If you have the option of switching, I strongly suggest you explore the possibility of treating your PCa w/CK. Another option is PBT (proton beam therapy) which has a longer track record than CK but it is only offered at a limited number of sites in the US and requires a longer treatment period -- from 7 to 10 weeks of 28-40 daily treatments vs only 4-5 treatments w/CK -- which will require you to live near the treatment site. PBT also requires the use of a body cast and the daily insertion of a water filled balloon in your butt prior to each treatment in order to protect the rectum because PBT does not have the body/organ movement capability of CK. Loma Linda Medical Center in SoCal is the only PBT facility located in CA that I know of. I contacted them during my research but insurance coverage was questionable and I did not need to follow up w/them after I discovered the availability of CK under Blue Shield at UCSF.

BTW, there is a Kaiser NorCal CK facility in South San Francisco at Oyster Point but Kaiser will not use its CK equipment for PCa -- only brain, lung, liver, bone and/or spinal cancers which they consider "inoperable." Since Kaiser is committed financially in terms of personnel & equipment to DaVinci and BT, they are unwilling to use it with PCa but another question you should ask is: "Why won't they use CK for PCa?" Maybe you can get them to change their policy on this.

Good luck!

rch
Posts: 78
Joined: Nov 2011

N Cal Kaiser Permanente does offer HDR,IMRT,IGRT at it's Santa Clara facility, but I'm not sure if they use these for Localized prostate cancer. Please check the link below.

http://www.permanente.net/homepage/kaiser/pages/d14532-top.html

Thanx

DanTW
Posts: 5
Joined: Dec 2011

Thanks to all (rch, hunter49, swingshiftworker, Kongo, vascodagama, randall72 - sorry if I missed one of you...) for your caring and thoughtful advice. My wife and I will be seeing my doc today for a consultation and now I have much more info and a good list of questions. I'll keep you informed as to how today goes...

hunter49
Posts: 200
Joined: Oct 2011

good luck a good wife is a great start

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